OU on the BBC: Nobody's Normal - Responses to Baby love

Early in this programme I find myself thinking again about the words of Donald Winnicott, Paediatrician and Psychoanalyst, who said that the first mirror an infant has is its mother’s eyes.

It is the eyes of others on which the developing vision of a child is first able to focus and to begin to see a reflection of its impact on the world. Through this reflection the child begins to build a sense of who they are.

What does a child with a disability see in the eyes of its parents, those of the busy professionals crowded around its hospital bed, the eyes of neighbours or people in the street as they look into the pram?

The child sees what we see in this program, intense love and intense commitment and yet also anxiety and fear and the sense that nothing will ever be the same again. Devotion to a child, whatever it may be, is also combined with a deep sense of loss and mourning for what might have been and what could have been in the future.

We see tremendous strength living alongside brittle fragility. We witness, with a raw and uncluttered vividness, the early struggles with this fundamental, and ultimately fruitless, dilemma of where does normal end and abnormal begin.

Note to self for next clinic: Think more about fathers.

It does not have to be bad news.

Having a disabled child raises challenging, perhaps novel, often life-changing experiences for parents. Diagnosing impairment loses its tragic meaning when it means a child might live. Parents form close relationships with professionals and members of their families. Disabled children bring parents together. Parents end up working with one another, assimilating new, uncertain knowledge. They learn to live together with the support of significant others.

Disabled children might be seen, then, as a gift in terms of qualitatively shifting the life-worlds of their parents, their siblings and those around them. Disabled children prompt us to value diversity just as all children demand us to rethink our understandings of humanity.

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Watching the programme as an adult who was born disabled, and who most strongly identified with the children, I was left feeling utterly frustrated.

The parents chosen for the programme were wonderful, thoughtful human beings. I was particularly impressed by the involvement of the fathers, surely a modern phenomena, but again my heart dropped as I was forced to listen to yet another numbed-out mother trying to convince herself, and us, that her unborn disabled child was already suffering so much that the most loving thing she could do was kill it, and interspersing her plea for understanding into real life stories which vividly illustrated the falseness of her argument.

Children who are loved themselves, love life, however difficult it is. You cannot shrink the context of our lives from a deep-rooted, complex and value laden world view of disabled people, to a shallow, simplistic notion of individual choice for which no one must be judged. When you do this you end up with a Walt Disney version of life which bears no relation to the real struggle faced by disabled people of all ages to live a valued, supported, effective life because of the oppression we face, and in which it is often only the enduring love of our parents, friends, lovers and allies which keeps us alive.